Hi JenB,
I read to the end of both of your posts last night but was too tired to reply (I’m sure you know the feeling well!) and your plight is so similar to many, as I’m sure if you read through the posts, you’ll see. I’ve only been suffering from this for 11 years, due to a fall but it breaks my heart to hear of those who have spent half a lifetime in this vulnerable state, trying to get help and answers.
I have often wondered ‘why?’ we are all treated this way WORLDWIDE, this reluctance to investigate and diagnose us properly, it didn’t make sense but yesterday evening, a GP on TV here in the UK, who was talking about Alzheimers, said something curious. I was only half listening, so can’t quote him verbatim but he said something along the lines of, nobody want’s to diagnose these people because they don’t want them, as they can do nothing for them – so technically doctors are selecting which patients they wish to deal with, this is hardly moral.
The Hippocratic Oath says something like ‘first do no harm’ yet by not diagnosing, they are causing MUCH harm, physically, emotionally and financially. The physical and emotional side we all understand but for those without partners (or who’s partners leave – often due to lack of diagnosis) it’s even more of a nightmare. It’s much easier to get a disability benefit if you have a diagnosis, or at least a partial diagnosis, otherwise, so much of your much reduced (through illness) quality time, is spent filling in forms, having assessments and battling to win tribunals, fighting to keep your head above water – madness!
Steps down off soapbox . . .
Regards
Barbara
(UK)